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Objectives: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end-of-life., Methods: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings., Results: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal, or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and National Institute for Health and Care Excellence (NICE) statements presented regarding end-of-life care planning and discussions., Conclusions: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services, increases our understanding of how services help people with dementia and family carers prepare for end-of-life. We found fragmentation across the service system, lack of continuity, and tensions regarding when these conversations should be initiated and by whom., (© 2020 John Wiley & Sons Ltd.)

Background Given the globally ageing population, care homes have an important role in delivering palliative and end-of-life care. Advance care planning (ACP) is promoted to improve the quality of end-of-life care in this setting. While many professionals can be involved in ACP, little is known about what influences multi-professional involvement and how multi-professional working impacts the ACP process in the UK. This study investigated multi-professional practice in relation to ACP in nursing homes. Design and methods An ethnography was undertaken in two UK nursing homes using multiple methods of data collection: observations, interviews and document review. Participants included the following: nursing home residents (n  = 6), relatives (n  = 4), nursing home staff (n  = 19), and visiting health and social care professionals (n  = 7). Analysis integrated thematic analysis, mapping of resident ACP trajectories and documentary analysis. Findings This paper suggests that multi-professional and relatives' involvement in ACP was disjointed. Continuity and coordination were disrupted by misalignment of visiting professional and nursing home organisational structures. Findings show a 'knotworking' approach to teamwork and power imbalance between nursing home staff and visiting professionals, such as general practitioners. While residents wished their relatives to be involved in their ACP, this was not formally recognised, and limited support existed to facilitate their involvement. Conclusion The structure and organisation of multi-professional and relatives' involvement in ACP led to fragmentation of the process. This marginalised the voice of both the resident and nursing home staff, thereby limiting ACP as a tool to enhance quality of end-of-life care. [ABSTRACT FROM AUTHOR]

Little is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia. The study is based on a qualitative secondary analysis of interviews with 24 people living alone with early-stage dementia in North Wales, United Kingdom, and one of their relatives or friends who supported them. All but four of the dyads were interviewed twice over 12 months (a total of 88 interviews). In the analysis, it was observed that several people with dementia expressed the desire to continue living at home for 'as long as possible'. A framework approach was used to investigate this theme in more depth, drawing on concepts from the existing studies of people living with dementia and across disciplines. Similarities and differences in the future outlook and temporal orientation of the participants were identified. The results support previous research suggesting that the future outlook of people living with early-stage dementia can be interpreted in part as a response to their situation and a way of coping with the threats that it is perceived to present, and not just an impaired view of time. Priorities for future research are highlighted in the discussion. [ABSTRACT FROM AUTHOR]

In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound importance to children and their families. We overlook their search for wholeness in the absence of cure and fall short of offering truly holistic care. This paper explores how developments in advance care planning and related documentation are addressing these issues. Since children's spirituality is elusive and rarely explored in practice, it aims to clarify our understanding of it with a variety of examples and contains suggestions for hearing the voice of the child amid the needs of parents and professionals., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) discussions with patients and their caregivers have been subjected to intense ethical and legal debate in recent years. Legal cases and national guidelines have tried to clarify the best approach to DNACPR discussions; however, there is little evidence of how best to approach them from the patient, family or caregiver perspective. This paper describes published accounts of patient, family and caregiver experiences of discussions about advance cardiopulmonary resuscitation (CPR) decision making., Methods: An integrative review of the UK literature between 2000 and 2016 including qualitative and quantitative studies was conducted. Worldwide, 773 abstracts were identified, and 20 papers from the UK were included in the final analysis., Results: Patient, family and caregivers prefer discussions to be initiated by someone trusted, and wishes for family involvement vary depending on the context. Timing of discussions should be individualised, though discussions earlier in the illness are often preferable. Discussions held in the acute setting are suboptimal. CPR decisions should be part of a wider discussion about future care and adequate communication skills training is important., Conclusions: The findings of this review are at odds with the current statutory framework and potentially challenging for medical professionals who are working in a stretched health service, with pressure to discuss DNACPR decisions at the earliest opportunity. With increasing focus on person-centred care and realistic medicine, patient narratives must be considered by doctors and policy makers alike, to minimise harm., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

There are many challenges in providing palliative and end-of-life care to people with dementia; some of which may be reduced through advance care planning (ACP) to support the person with the diagnosis to have a greater influence on their care at end-of-life. Advance care planning has been defined as a process of discussing and recording wishes, values, and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. This paper considers some of the barriers and enablers to lead to better support of ACP in families affected by dementia. [ABSTRACT FROM AUTHOR]

A diagnosis of dementia can have a significant effect, not only on the person diagnosed, but also on the person's family. Drivers within national policy and strategy to raise awareness and promote education have improved the understanding of dementia across professional groups, as well as within the wider population. However, families living with dementia still struggle to find information and support. This paper explores the common issues faced by families, and focuses on a relationship approach to care. The role of the community nurse can be central to supporting people with dementia and their families to live well in their own communities. The paper uses a casestudy approach to discuss three scenarios commonly raised by family carers and people with dementia: (1) seeking help and support at point of seeking diagnosis, (2) knowing the 'right time' to seek help and advice, and (3) when symptomatic changes affect wellbeing and relationships. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP). ACP is a complex legal, ethical and practical issue that can enable caregivers to consider future strategies and enable them to provide high quality care at the end of life. The paper looks at some of the ethical and legal issues associated with this sensitive end-of-life issue. [ABSTRACT FROM AUTHOR]

Background: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. Methods: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. Results: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. Conclusion: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning. [ABSTRACT FROM AUTHOR]

Introduction: Perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life‐limiting or life‐threatening condition. Little is understood about the role of children's hospice care and how it contributes to effective perinatal palliative care. Design: The study aims to answer the question "what is the role of children's hospices in the provision of perinatal palliative care and advance care planning in the United Kingdom?" Methods: An electronic survey was sent to all 54 children's hospices in the United Kingdom between May and June 2022. Results: Thirty hospices responded, representing 54% of the sector. All regions of all four counties are represented. Numbers of referrals to hospices for perinatal palliative care have increased significantly over the last 5 years. Hospices provide a range of services for families and babies, usually from the point of diagnosis or recognition of a life‐limiting or life‐threatening condition, underpinned with counseling and emotional support. Hospices worked with a range of professionals and services, most commonly fetal medicine and neonatal services. Advance care plans were an important element of effective perinatal palliative care, strengthening parent–professional and interprofessional relationships. Conclusion: Children's hospice services play an important and growing role in the perinatal care of babies and families following the diagnosis or recognition of a life‐limiting or life‐threatening condition. The family‐centered approach to care, from a broad, biopsychosocial perspective means that hospices make a unique and meaningful contribution to both the clinical and psychological needs of families. Clinical relevance: The family‐centered approach to care, from a broad, biopsychosocial perspective means that hospices make an important contribution to both the clinical needs of babies, and psychological needs of families antenatally, in the neonatal period and after death. [ABSTRACT FROM AUTHOR]

The use of 'Do Not Attempt Cardiopulmonary Resuscitation' (DNACPR) recommendations has come under scrutiny during the COVID-19 pandemic, and the Care Quality Commission (CQC) has issued a call for new standards, guidance and training. One group for whom new training is required is 'capacity professionals' working in and with residential care facilities. These professionals (including Independent Mental Capacity Advocates and Best Interests Assessors) typically have a social work background and have specialist training regarding the 2005 Mental Capacity Act , the provisions of which have a direct relevance to DNACPR recommendations. We report on a survey and focus groups that probed the experiences of this professional group during the pandemic. We recruited 262 participants by approaching civil society organisations in which capacity professionals are well represented; twenty-two participated in follow-on focus groups. We used manifest content analysis and descriptive statistics to analyse the results. Our findings contribute to an emerging picture of what transpired in residential care homes during the first year of the pandemic and help to provide an empirical and normative basis for the development of the new guidance and training for which the CQC has called. [ABSTRACT FROM AUTHOR]

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established. [ABSTRACT FROM AUTHOR]

Objective: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods: In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster‐randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Results: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post‐ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion: Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice. [ABSTRACT FROM AUTHOR]

Background: Patients still receive non-beneficial treatments when nearing the end of life. Advance care planning (ACP) interventions have shown to positively influence compliance with end of life wishes. Hospital physicians seem to miss opportunities to engage in ACP, whereas patients visiting the outpatient clinic usually have one or more chronic conditions and are at risk for medical emergencies. So far, implemented ACP interventions have had limited impact. Structural implementation of ACP may be beneficial. We hypothesize that having ACP conversations more towards the end of life and involving the treating physician in the ACP conversation may help patient wishes and goals to become more concrete and more often documented, thus facilitating goal-concordant care. Aim: To facilitate timely shared decision making and increase patient autonomy we aim to develop an ACP intervention at the outpatient clinic for frail patients and determine the feasibility of the intervention. Methods: The United Kingdom's Medical Research Council framework was used to structure the development of the ACP intervention. Key elements of the ACP intervention were determined by reviewing existing literature and an iterative process with stakeholders. The feasibility of the developed intervention was evaluated by a feasibility study of 20 ACP conversations at the geriatrics and pulmonology department of a non-academic hospital. Feasibility was assessed by analysing evaluation forms by patients, nurses and physicians and by evaluating with stakeholders. A general inductive approach was used for analysing comments. The developed intervention was described using the template for intervention description and replication (TIDieR). Results: We developed a multidisciplinary timely undertaken ACP intervention at the outpatient clinic. Key components of the developed intervention consist of 1) timely patient selection 2) preparation of patient and healthcare professional 3) a scripted ACP conversation in a multidisciplinary setting and 4) documentation. 94.7% of the patients, 60.0% of the nurses and 68.8% of the physicians agreed that the benefits of the ACP conversation outweighed the potential burdens. Conclusion: This study showed that the developed ACP intervention is feasible and considered valuable by patients and healthcare professionals. [ABSTRACT FROM AUTHOR]

Background: Globally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional. Method: Underpinned by the Capability, Opportunity, Motivation–Behaviour (COM‐B) model for behaviour change, a cross‐sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open‐ended questions were mapped and correlations between COM‐B and demographic profiles identified. Results: Responses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction. Conclusion: Although advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM‐B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation. [ABSTRACT FROM AUTHOR]

Introduction advance care planning (ACP) in care homes has high acceptance, increases the proportion of residents dying in place and reduces hospital admissions in research. We investigated whether ACP had similar outcomes when introduced during real-world service implementation. Methods a service undertaking ACP in Lincoln, UK care homes was evaluated using routine data. Outcomes were proportion of care homes and residents participating in ACP; characteristics of residents choosing/declining ACP and place of death for those with/without ACP. Hospital admissions were analysed using mixed-effects Poisson regression for number of admissions, and a mixed-effects negative binomial model for number of occupied hospital bed days. Results About 15/24 (63%) eligible homes supported the service, in which 404/508 (79.5%) participants chose ACP. Residents choosing ACP were older, frailer, more cognitively impaired and malnourished; 384/404 (95%) residents choosing ACP recorded their care home as their preferred place of death: 380/404 (94%) declined cardiopulmonary resuscitation. Among deceased residents, 219/248 (88%) and 33/49 (67%) with and without advance care plan respectively died in their care home (relative risk 1.35, 95% confidence interval [CI] 1.1–1.6, P  < 0.001). Hospital admission rates and bed occupancy did not differ after implementation. Discussion About 79.5% participants chose ACP. Those doing so were more likely to die at home. Many homes were unwilling or unable to support the service. Hospital admissions were not reduced. Further research should consider how to enlist the support of all homes and to explore why hospital admissions were not reduced. [ABSTRACT FROM AUTHOR]

Abstract: UK health policy dictates that Advance Care Planning (ACP), including the use of living wills, promotes choice and quality regarding end of life care for those with chronic and life-threatening conditions and it has been incorporated in self-management training. This paper reports a qualitative evaluation based on in-depth interviews with 31 respondents who had completed a UK-based lay-led self-management course (The Expert Patients Programme), and 12 respondents who had completed the same course adapted for people who are HIV positive. We draw upon previous social research on ‘death awareness’ and the biographical context of illness experience and management in examining the impact of incorporating this subject within a self-management intervention. The analysis demonstrates that many participants were unprepared to face issues raised in the session with material represented as disrupting some aspects of illness adaptation and existing views about death and dying. Positioning educational material on death and dying alongside that on ‘positive’ self-management of illness highlights the complexities and sensitivities of planning for end of life care with implications for future educational interventions of this type. [Copyright &y& Elsevier]

Background: Due to the uncertain disease trajectory and variable rate of progression in chronic obstructive pulmonary disease (COPD), health care professionals (HCPs) are challenged in explaining what the future may hold for patients compared to those with lung cancer (LC). Support and communication of timely information can significantly improve health outcomes.Objective: This study sought to identify factors that impact communication and support and recommend ways to improve patients' understanding of living with life-threatening illness.Methods: Semi-structured interviews with patients with LC (n = 22) and advanced COPD (n = 18), their informal carers (21 LC and 18 COPD) and HCPs (n = 51). Patients were recruited from primary and secondary care in the East of England, UK, during 2010-12.Results: Directness and clarity characterized communication in LC, whereas uncertainty and limited explanations predominated in COPD. Discussions on how the disease might impact on decisions and preferences to be made in the future were less common in COPD. Information for LC patients was mainly from hospital clinicians and any information for COPD patients mainly from primary care clinicians.Conclusions: The experience of COPD patients could be improved by professionals soon after diagnosis explaining to them the typical pattern of decline in COPD, highlighting the inherent uncertainties about when exacerbations and death may occur. This conversation should lead to planning for the different challenges that the patient and informal carer recognize as most important to them. This contrasts with the 'breaking bad news' conversation that oncologists are highly trained to deliver. [ABSTRACT FROM AUTHOR]

Background: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. Aim: Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations. Design: Online survey of UK palliative/hospice services' response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges. Respondents: Two hundred and seventy-seven services. Results: More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures. Conclusions: Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model. [ABSTRACT FROM AUTHOR]

Background: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. Aim: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. Design: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. Setting/participants: A random representative sample of adults from one region of the United Kingdom (n = 1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. Results: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. Conclusions: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a 'one size fits all' approach will not work; rather bespoke targeting is required with educational and media messaging aligned. [ABSTRACT FROM AUTHOR]

Background: The population of frail elders is growing, and due to their vulnerability to sudden deterioration, advance care planning is particularly important. However, advance care planning is uncommon for multiple reasons, some of which are linked to the perceptions of frail elders and their families. Aim: To explore the barriers and enablers to advance care planning engagement with frail elders. Design: Qualitative in-depth interviews with thematic analysis. Setting/participants: Purposive sample of 10 frail elders and 8 nominated family members using a community-based older persons' service run by a large urban UK hospice. Frail elders had capacity, were ⩾65 (median 85, range 71–95), scored 6 or 7 (median 6.5) on the Clinical Frailty Scale, and 70% were female. Results: Key barriers were: Advance care planning is unclear, in terms of meaning and the language used; Lack of relevance, with frail elders preferring to focus on living well now; and the Importance of family, relationships and home, and the influence of relationship on end of life decision-making. Engagement strategies included preparing the frail elder for advance care planning conversations and using a gentle, honest, individualised approach. Conclusions: Essential enablers for frail elders are understanding what advance care planning is and why it may be relevant to them. For professionals, enablers include recognising the importance of living well now and relational decision-making. To further support advance care planning, recommendations include early engagement and re-conceptualising advance care planning as an ongoing process which encompasses current and future care. Further research is needed in different cultures and care contexts. [ABSTRACT FROM AUTHOR]

Background: Advance Care Planning is recommended for people with end-stage kidney disease but evidence is limited. Robust clinical trials are needed to investigate the impact of advance care planning in this population. There is little available data on cost-effectiveness to guide decision makers in allocating resources for advance care planning. Therefore we sought to determine the feasibility of a randomised controlled trial and to test methods for assessing cost-effectiveness.Methods: A deferred entry, randomised controlled feasibility trial, incorporating economic and process evaluations, with people with end-stage kidney disease, aged 65 years or older, receiving haemodialysis, in two renal haemodialysis units in Northern Ireland, UK. A nurse facilitator helped the patient make an advance care plan identifying: a surrogate decision-maker; what the participant would like to happen in the future; any advance decision to refuse treatment; preferred place of care at end-of-life.Results: Recruitment lasted 189 days; intervention and data collection 443 days. Of the 67 patients invited to participate 30 (45%) declined and 36 were randomised to immediate or deferred advance care plan groups. Twenty-two (61%) made an advance care plan and completed data collection at 12 weeks; 17 (47.2%) were able to identify a surrogate willing to be named in the advance care plan document. The intervention was well-received and encouraged end-of-life conversations, but did not succeed in helping patients to fully clarify their values or consider specific treatment choices. There was no significant difference in health system costs between the immediate and deferred groups.Conclusions: A trial of advance care planning with participants receiving haemodialysis is feasible and acceptable to patients, but challenging. A full trial would require a pool of potential participants five times larger than the number required to complete data collection at 3 months. Widening eligibility criteria to include younger (under 65 years of age) and less frail patients, together with special efforts to engage and retain surrogates may improve recruitment and retention. Traditional advance care planning outcomes may need to be supplemented with those that are defined by patients, helping them to participate with clinicians in making medical decisions.Trial Registration: Registered December 16, 2015. ClinicalTrials.gov Identifier: NCT02631200 . [ABSTRACT FROM AUTHOR]

The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is a process supported by the Resuscitation Council (UK) and UK Royal Colleges to create personalized anticipatory care plans for patients. Hampshire Hospitals NHS Foundation Trust has been an early adopter of this process with variability in engagement with this process across our trust. A quality improvement project was performed to improvement engagement with ReSPECT as well as consistency and quality of documentation. Since patients admitted with fragility fractures are often frail, elderly and at risk of deterioration post-operatively, we focused on improving ReSPECT in the orthopaedic department with medical departments used for comparison post-intervention. Interventions included teaching sessions for consultants and junior doctors, increased senior orthogeriatrician input, and electronic documentation of ReSPECT forms. Post-intervention results revealed an improved engagement with the ReSPECT process with orthopaedic patients with frailty or life-limiting co-morbid conditions more likely to receive early anticipatory care planning as part of their admission process compared to medical inpatients. Senior consultant engagement was key to providing a cultural shift in early anticipatory care planning which helped to foster an environment of open communication among the team, allowing for more effective recognition of frail or co-morbid patients. [ABSTRACT FROM AUTHOR]

A crucial part of caring for someone with end-stage kidney disease is ensuring their wishes at the end of life are documented, understood and acted on. Peter Ellis explores the different tools that can be used by trained and competent health professionals for the purpose of advance care planning. He suggests that kidney care professionals should at the very least be able to signpost to these resources. [ABSTRACT FROM AUTHOR]

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers. [ABSTRACT FROM AUTHOR]

Aims and objectives To examine nursing home managers' knowledge, attitudes, beliefs and current practice regarding advance care planning for people with dementia in long-term care settings informed by the theory of planned behaviour. Background Internationally, advance care planning is advocated for people with dementia. However, evidence suggests that discussions with people with dementia are rare, particularly in long-term care settings. Whilst nursing home managers can be considered central to implementation in this setting, there is a dearth of research that has examined their perspective. This study reports on their role with regard to advance care planning and the perceived factors which influence this. Design A cross-sectional postal survey was carried out as part of a larger scale sequential explanatory mixed-methods study between January-March 2015. Setting and participants Nursing home managers in a region in the UK ( n = 178). Results A response rate of 66% ( n = 116) was achieved. Nursing home managers demonstrated a lack of knowledge of advance care planning, with negative attitudes underpinned by concerns regarding the capacity and lack of perceived benefits to the person with dementia. Currently, they do not view advance care planning as part of their role, with lack of ownership impacting upon current practice behaviours. Conclusions Whilst nursing home managers recognise the potential benefits of advance care planning, barriers and challenges create a reluctance to facilitate. Targeted training to address the knowledge deficit is required, with the wider components of advance care planning promoted. There is a need for greater role clarification to ensure nurses in long-term care settings identify with the process in the future. A gap between rhetoric and reality of implementation is evident; therefore, long-term care settings must critically examine system, organisational and individual factors for failure to implement advance care planning for people with dementia. Relevance to Clinical Practice Increased cognisance of the context in which advance care planning takes place is vital for improved implementation in this context. In addition strong nursing leadership is imperative to facilitate initiation, engagement and re-evaluation of the process of advance care planning. [ABSTRACT FROM AUTHOR]

Background: The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. Aim: This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. Design: A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Setting/participants: Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths (n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. Results: The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient's preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. Conclusion: This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems. [ABSTRACT FROM AUTHOR]

Background: Homeless individuals have a high prevalence of multiple chronic comorbidities and early mortality compared to the general population. They also experience significant barriers to access and stigmatization in the healthcare system. Providing advance care planning, palliative care, and end-of-life care for this underserved population is an important health issue. Aim: To summarize and evaluate the evidence surrounding advance care planning, palliative care, and end-of-life care interventions for homeless persons. Design: A systematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. Data sources: Articles from MEDLINE, EMBASE, CINAHL, PsycINFO, Social Work Abstracts, Cochrane Library, Web of Science, and PubMed databases were searched through 13 June 2015. Peer-reviewed studies that implemented advance care planning, palliative care, and end-of-life care interventions for homeless populations were included. Data from studies were independently extracted by two investigators using pre-specified criteria, and quality was assessed using modified Cochrane and Critical Appraisal Skills Programme tools. Results: Six articles met inclusion criteria. Two studies were randomized controlled trials involving advance directive completion. Two cohort studies investigated the costs of a shelter-based palliative care intervention and predictors for completing advance directives. These studies were rated low to fair quality. Two qualitative studies explored the interface between harm-reduction services and end-of-life care and the conditions for providing palliative care for homeless persons in a support home. Conclusion: The effectiveness of advance care planning, palliative care, and end-of-life care interventions for homeless individuals is uncertain. High-quality studies of interventions that reflect the unique and complex circumstances of homeless populations and investigate patient-related outcomes, caregiver burden, and cost-effectiveness are needed. [ABSTRACT FROM AUTHOR]

The uptake of advance care planning ( ACP) is particularly low among people with dementia. This may reflect barriers to communication between professionals, patients and families in the face of lack of consensus about the process. This study aimed to methodically investigate consensus views of how ACP should be explained and carried out with people with dementia. A three-round Delphi study explored views of how and when ACP should be addressed, what should be covered, who should be involved and why rates of ACP are low. Seventeen participants took part comprising family members, old age psychiatrists and policy makers. Thirty-two items reached consensus. The panel agreed on 11 different areas for discussion. They concurred that ACP was best addressed after the person has come to terms with the diagnosis when the individual feels ready to do so. There was a consensus view that the process should be couched in terms of 'certain possibilities'. Consensus items emphasised personal choice and autonomy, while also prioritising the need to discuss financial aspects and to include spouses. There was no consensus that professionals should be involved, although the panel viewed them as carrying some responsibility for low uptake. It is suggested that ACP should include general discussion of values as well as coverage of specific points. Professionals need to offer discussion and information on ACP, but also make clear that the patient has the right to choose whether to pursue ACP or not. [ABSTRACT FROM AUTHOR]

The article focuses on a study which aims to explore the experiences of people with end-stage kidney disease with regards to starting haemodialysis, its impact on quality of life and their preferences for future care. It also aims to explore the Advance Care Planning needs of the population. It offers the semi-structured qualitative interview study of people receiving haemodialysis.

The article analyzes experience of senior medical and nursing staff on Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit. The study results found recognition of an illness as life-limiting, Advance Care Planning as a multi-disciplinary process and pros and cons associated with Advance Care Planning.

Background Increasingly, people with neurodegenerative illness are cared for at home until close to death. Yet, discussing the reality of dying remains a social taboo. Objective To examine the ways, family caregivers of people living with motor neurone disease (MND) experienced the dying of their relative and to identify how health practitioners can better prepare families for end-of-life care. Design Secondary analysis was undertaken on data sets generated from two longitudinal qualitative studies employing similar data collection and analysis methods. Combining data sets increased participant numbers in a low incidence disease group. Setting and participants Primary studies were undertaken with family caregivers in England and Australia. Interview and observational data were collected mostly in home. Participants who discussed dying and death formed the sample for secondary analysis. Results Combined data revealed four major themes: planning for end of life, unexpected dying, dignity in the dying body and positive end to MND. Despite short survival predictions, discussions among family members about dying were often sporadic and linked to loss of hope. Effective planning for death assisted caregivers to manage the final degenerative processes of dying. When plans were not effectively communicated or enacted, capacity to preserve personhood was reduced. Discussion and Conclusion Returning death and dying to social discourse will raise the level of community awareness and normalize conversations about end-of-life care. Strategies for on-going, effective communication that facilitates advance care planning among patients, their families and practitioners are essential to improve dying and death for people with MND and their family caregivers. [ABSTRACT FROM AUTHOR]

Advance Care Planning (ACP) remains extremely low in the US, due to numerous institutional and cultural barriers and discomfort in discussing death. There is a need for guidance about how patient and healthcare providers can effectively engage in ACP discussion. Here we analyze the linguistic strategies that focus-group participants use when discussing ACP in detailed ways. Prevalent linguistic structures in effective ACP discussions were loved ones' end-of-life narratives, hypothetical narratives, and constructed dialogue. In elucidating spontaneous, unprompted approaches to effective discussion of end-of-life issues, such research can help to dislodge communicative barriers to ACP so that more people are prepared to engage the process. [ABSTRACT FROM AUTHOR]

Background: People with advanced neurological conditions (ANCs) face complex problems and needs that are often unrecognised and undertreated. Their last year of life may be characterised by unplanned hospital admissions and an unexpected death. A National End-of-Life Care Programme (NEoLCP) 2010 framework made recommendations to aid timely and appropriate end-of-life care for people with ANCs. Objectives: Assessment of key outcomes of a UK nurse-led palliative neurology service against the NEoLCP standards. Method: A retrospective study of clinical records of patients who died from an ANC under the care of the service from December 2006 to April 2012. Results: All 62 patients had multidisciplinary care coordinated by a key worker-a clinical nurse specialist (CNS) in palliative neurology. Mental capacity was assessed in 95% of cases, of which 95% had a documented advance care plan or best interest decision. The CNS had specific input regarding carer distress in 77% of cases. Mean hospital admissions were 0.9 per patient in the last year of life, compared with 3.5 nationally across all diagnoses. The service demonstrated better outcomes in other key areas, including place of death, with more patients dying at home or in the hospice compared with national figures. Conclusion: This service model fulfils key NEoLCP recommendations, as well as resulting in low hospital admissions and deaths. INSET: Box I. Definitions of advance care planning and best interest.... [ABSTRACT FROM AUTHOR]

The article discusses a research exploring the views and expectations about living and dying among care home residents and how their views are affected by their experience in the care home. Study reveals that people living in care homes are not different from the rest of the population and the deaths of other residents do not shape their views and priorities for end-of-life care. The findings can help introduce, discuss and tailor existing frameworks and programmes of end-of-life care.

Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the opportunity to write an ACP for the person with dementia. Carer—patient dyads were randomized to ‘usual care’ or the intervention. Carer-related outcome measures included the Kessler Distress Scale, Decision Satisfaction Inventory, Client Satisfaction Questionnaire and the Euroqol-5D, measured at baseline, six weeks, six months and three months after bereavement. The Satisfaction with End of Life Care in Dementia Scale was completed if the patient died. The 32 patient participants were physically frail and in the advanced stages of dementia: 62% had pressure damage to the skin, all needed feeding assistance and 95% were in pain. Nearly 50% died during the six-month follow-up period. Carers were difficult to recruit during acute admission; 33 patients and carers entered the study (22 intervention arm; 11 control arm). Only seven carers made ACPs. The care planning discussion was well received, but few carers wrote an ACP, despite intensive support from an experienced nurse specialist. Advance care planning is, in theory, a necessary intervention for people with severe dementia; the reluctance of carers to write plans needs to be explored further. [ABSTRACT FROM PUBLISHER]

It is only in the last few years in the UK that serious attention has been paid by politicians and policy makers to the issue of palliative care needs beyond cancer. This review examines selected examples of research undertaken in the last 20 years. These have shown clearly that patients with other diseases, who tend to be aged over 65 years, experience disadvantage in terms of health and social care provision, particularly specialist palliative care, in spite of needs that are similar to those with advanced cancer. Findings from these studies have informed the debates in the UK about the wider provision of palliative care with policy guidance now emerging in the areas of long-term conditions and older age, which in turn has prompted new research. Gaps and priorities for future research are identified as the following: socially structured disadvantage and the relationship to palliative care need; cultural and social diversity; physical and mental co-morbidity; frailty; and prognostication and planning for care. [ABSTRACT FROM AUTHOR]

Aim To develop and pilot an advance care planning (ACP) intervention for lung cancer nurses to use in discussing end-of-life preferences and choices for care with patients diagnosed with inoperable lung cancer. Design A prospective qualitative design with semistructured individual patient interviews. A grounded theory approach was used for the analysis. Sample Fifteen patients took part in ACP discussions with their nurse and nine agreed to be interviewed by a researcher about their perceptions of the intervention. Results Patients' reactions to the ACP process varied, but they welcomed the recording of their wishes and appreciated the courage of the nurses in bringing up the subject of future care. Conclusion This study explored the role of ACP as a method of enabling patient choice for lung cancer patients in the UK. Further research is needed to determine the components of ACP and the training needs of staff. [ABSTRACT FROM AUTHOR]